Fun and games

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I realise my recent blog posts have been a bit serious. Actually, I’ve a lot of fun with my carers. I thought I’d share a few stories.

At Christmas one of my carers did some decorating for me. She attached a knitted Santa to my hoist bar, that my daughter made as a child. A hoist bar is the metal bar that hangs beneath the electric hoist mechanism on the track attached to my ceiling. Santa was attached in such a way that he was staring straight down at me. He looked like he was strapped to a railway line upside down.

I have two slings I use when hoisted. One is a day sling for transfer into my wheelchair or reclining front room chair, as its name suggests, you wear it all day. The other is a toileting sling to transfer onto the commode. When using this second sling Santa has a rather shocked look on his face, well who wouldn’t. I was so glad when the decorations were taken down, mind you Santa looked relieved too.

In order to make my wheelchair seen better at night and so I can see in the dark, I have bicycle lights on it and reflective tape. At Christmas I was given some waterproof LED strip lights. I decided they would be a great extra safety feature. I was not thinking “let’s pimp my ride.” Nor did the idea, “this will make me look cool.” Cross my mind for a moment. So, I asked one of my younger carers to fit them, as I knew she would understand the need for ‘safety’ and ‘visibility’. I didn’t ask her because she would understand the need to make my wheelchair look good, because obviously that wasn’t on my mind anyway. Then at Church the next Sunday evening I demonstrated just how safe these lights made my wheelchair by switching them on and rotating my wheelchair. I have demonstrated the safety feature several times since, to lots of people. Kids love them.

I enjoy a bag of chips, well who doesn’t. Every now and then Mary goes to visit her Dad and I have a carer for a full day. On these days I look for an excuse to go out to the park via the fish and chip shop. Funnily enough they don’t object too much to the idea. We always enjoy sitting in the park eating chips watching the world go by. Sometimes being cared for is very hard work.

I tend to have a good laugh with my carers. It’s important that the carers I choose have a good sense of humour and all of them do. Sometimes we laugh so much I am nearly in tears. Laughter is a great medicine; it is also good way to deal with embarrassment. One of my carers noted that there is a warning sign that I am about to go into a collapse it’s when I become quiet and stop joking around. I start to stare into space and become unresponsive. When it first happened for her, she thought she had offended me.

My bed is supplied by the district nurse and it can rise up and down as well as profile. That means the head and legs can separately raise in various ways. The reason it’s height adjustable is so my carers can reach me without hurting their backs. Whenever my bed is adjusted in height or I am hoisted, I like to sing an appropriate song. “You raise me up…” Or “up, up and away…” You get the idea. I am sure hearing the exact same song every time is a delight to my carers. I can see it in their faces when they look bored. Or when they say, “not again!”

My riser recliner chair has a ripple cushion as does my bed. The cushion on my chair consists of fingers of inflatable pipes. So, any unsuspecting person sitting on my chair gets a surprise every few minutes when the ripple effect kicks in. It’s as if a hand massages your bottom. My bed is not quite so dramatic in its ripple effect, although when someone has perched on the edge they have been surprised to feel the rubber tubes ripple.

While thinking of riser recliner chairs reminds me of the first time, I had one years ago. It was before I had a hospital type bed and when I could still stand for short times on good days. I was sitting in the chair and I wanted to get up, but my legs wouldn’t let me, they were too weak. This was one of those days my legs were not working. But I thought to myself, “I’m in a riser chair, why not use the chair to help me stand.” I can be such a genius. I powered the chair upright and as it rose up, I slipped down the chair and into a heap on the floor, where Mary found me a few moments later. Had I used my brain I would have realised that if my legs were too weak to lift me out of the chair, they were too weak to hold me up. Instead I had to wait in a heap on the floor for the Deane helpline people to arrive and assist me back onto the seat. I’ve had a lot of instances over the years where my desire to try and stand has overcome my common sense. I think sometimes it just feels silly that my legs won’t work, and so I think of course they will, then I try them and find they don’t.

I have a lot of smart technology to assist me. My main one is Alexa; it connects most of my other smart devices together, so I can use my voice to control them. One of my main ones is a doorbell with camera and intercom. It’s my favourite way to surprise, I mean greet, someone at the door if I get to use it before Mary or my carer answers the door. When someone rings the doorbell, I try to get to the intercom first so that a disembodied voice can say “Hello!” It’s always fun watching the reaction on the camera.

One day the postman was standing waiting with a parcel having rung on the bell. Mary was upstairs, so the front door was unlocked, I said “Hello, I can’t get to the door as I’m disabled, can you please just put the parcel inside the door.” He nearly jumped a foot in the air and was looking around for where the voice came from. The problem is, it only works on someone once.

My time with the carers is a time I look forward to. We have fun, it’s a laugh and they’re a support and help. We have interesting conversations about all sorts of things, and we become friends.

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The LED lights around the base of my wheelchair
The obvious safety benefits of my new LED lights

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